My husband,Bob, has PSP & despite the input of our wonderful Speech & Language Therapist lost all intelligible speech a year ago.
Although he can still walk with a rollator, attend day care once weekly which he enjoys immensely &, all-be-it as a silent observer, family social occasions - in other words although I attend to all his practical, hygiene & food needs he's still functioning to a reasonable degree.
My main concern is that loss of speech means he is in a very isolated place where his only means of communication is an Ipad which he has difficulty with as his thought processes are very slow,has difficulty spelling & finding the right letters.
Bob has never been one to share his thoughts & feelings. Now I have no real idea at all what he thinks about anything or how he really feels as his condition continues to deteriate-particularly as there are no facial clues.
Are there others in this situation who can share how they are/have dealt with this? Any input would be much appreciated as I have never encountered anyone in similar circumstances.
Best wishes PlantNut
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Plantnut
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Hello, Plantnut. Sorry you have had no reply yet, and that mine will be unsatisfactory. I didn’t have the same experience; my guy’s speech faded fast, but only entirely left him the last month or so. We fought hard and had some success with speech therapy, but in the end I guessed and sang and got him to laugh at repeated old favorite jokes. He lost his ability to use a computer very early.
Some folks here have recommended cue cards with common phrases for basic communication and requests. A few suggested white boards and markers. It seems either might work for you as you describe your husband’s current stage.
I am sorry not to have anything more useful. It’s such a hard place to be. I feel for you both.
Hi there Plantnut. I’m so sorry…It’s such a frustrating and horrible situation isn’t it.
My dad lost his speech very early on. We tried an iPad for a while but his coordination was too shot to manage with it for long. We now use magnetic letters on a board - we lay them out in the alphabet at the top of the board and he slowly drags them down to make words. He’ll point to the space if he needs a second letter. It really is slow and laborious and you need real patience … but it does work for actually expressing thoughts. It can really tire him out - 4 or 5 words is all he can manage in one sitting - but we have a break and carry on.
Like your Bob, my dad has never been one for expressing emotions but this disease has just compounded that beyond measure. We all worry what is going on inside his head as he is so locked in
Dear Plantnut, I found that all the suggestions regarding communication tools were fine but only as temporary measures. Please get a lasting power of attorney for health and finance and an advance care plan in place for him. My husband is no longer able to talk now but responded by lifting his thumb as a yes answer or squeezes my hand. Please give him time to respond and let others know that he understands but not able to communicate back and to ask a yes or no questions only. You will learn to anticipate his needs. I put on my husband’s favourite programs on t v and let him listen to the music that he enjoys. Surround him with family and friends and make life as normal as possible. Life will change but he is fortunate to have someone who knows him well. I wish you all the best in this journey that no one wants to be in.
Great advise Kasenda, the situation with my dad is very similar. As family, you have the connection and knowledge with your father to provide that connection and communication. Trust your instincts in knowing his preferences. My dad was never one for expressing his feelings either - I’ve found now he just wants to have sensitive company, be reassured and feel safe. He simply doesn’t have the energy to get into anything too heavy.
hi Plantnut. My husband is in a similar stage. We tried ipad and cue cards but these did not work for him. Even thumbs up down seems difficult for him now. He was the boss in our family and I know how hard it is for him now. Im glad we have already delegated the business to our children. But then I just realize how people lose importance once they are no longer in power and no longer of use to others. I really feel bad when people who used to be good to him sometimes just ignore him…
We tried every trick under the sun. It's heartbreaking and one of the more frustrating, devastating aspects of this disease. He kept on trying to talk, to tell me things, and I just could NOT understand. It's brutal. Just keep loving him and touching him and being with him. He's in there. This is so hard.
I went through a similar situation with my wife but before the disease she was always very communicative and not shy in showing her thoughts and feelings. I think this made it especially hard to accept the disease's outcome. We tried all the usual: speech therepy, Ipad, cue cards, thumbs etc. but in the end she reached the usual outcome of no way to communicate. I think this was especially hard on her and once she started coughing with pureed food and liquids that was basically the end and she willed herself to pass. I feel for you and wish you the best.
My Mom is in a similar place. Rarely can she articulate any words. Through speech therapy and family efforts we tried the Ipad, letter boards, and word cards.She never embraced any of those. She does however use the whiteboard. I think she uses this because it is a more immediate way to respond. Her hand writing has greatly deteriorated so we ask her to print, but she often just reverts to cursive writing which is sometimes impossible to read. We are holding on to this last means of commuication with her. She will sometimes try to share her feelings and concerns through her writings.
The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.
These are our experiences about loss of language:
*Communication:
One of the symptoms of PSP is that its speech becomes slower and more difficult to understand but generally its intelligence remains. I reproduce some reflections of Kevin_1:
“As the illness develops their mental processing becomes slower. That is they think slower, but they still think as adults and draw on a lifetime of experience and most likely using all of that wisdom which comes with it. So the way to speak is in a straight forward manner, not fast, simple language, but not slow as if talking to an idiot as in a movie, and to give them time. Ask them of they understand if it is complicated and if they want you to clarify anything. This is basic good communications practice. It works.”
For a time we attended sessions with a speech therapist until the disease progressed and no advantage was obtained, at the same time we combined it with exercises at home with a "Breather" (you breathe with some force in and out through it and it has adjustable resistance). Martina_MP uses a free app (great for iPad) called TalkPath Therapy by Lingraphica which has easy to follow speech and cognitive exercises.
On our case, we intend an App but It was not possible to use it for more than few months. As her dexterity deteriorated, she had problems placing her finger on the appropriate word or letter and we were able to buy a plastic screen cover that had an opening for each key on it; this helped to direct her finger and keep it one the right letter. Another problem she developed was the inability to tap her finger in a key or letter, and as such she would often have several letters in a row. For example if she tried to tap the letter A, it would show as AAAAA because she could not get her finger off the letter A quickly enough.
Some have successfully used for some time a cheap iPad plus free software text-to-talk program called Claro (claro.com) with a BigKeys keyboard that attaches to the iPad through an Apple device that is used for connecting to camera to an iPad . A voice comes from the Claro program. It's like a GPS voice.
On our case we have used a plastic laminated A3 sheet with the alphabet in large letters (40x40 mm) supported on a music stand at the height of the patient's eyes. She points to the letters and another person writes on a blackboard the letters that patient indicated.
You can also prepare "communication panels" with the alphabet and some pictograms that patient can be marked with a pointer. Up to the present time it is the best system we could find. Over time the pictograms become useless and it is necessary to use only letters, as large as possible.
Speak to the PSP patient as you would anyone else. When it comes time to ask a question try framing it to a yes or no response. It's not that the question is hard to understand but forming/finding the words for an answer may be difficult.
The communication with a patient of PSP is one of the most difficult problems to overcome.
When the patient can still verbalize it is important to know that saying NO requires less muscular effort than saying YES.
When verbalizing is almost imposible and the “communication panels” don´t work, to say YES by showing the thumb from the fist and saying NO by hitting the fist on a surface could be a solution. Alternatively taking the ”more active” patient´s hand and establishing that a squeeze is YES and no squeeze is NO.
There will come a time when the answers are slow and even erratic. In this case, it may be better to prepare the patient and tell that you are going to ask for a response later to a question that you are verbalizing at that moment. When the disease progresses, the response is slower, until making a thumb gesture or squeeze your hand may need at least 20 seconds.
To write down a big YES, NO on a sheet of paper and the patient could point to the correct one seems to be a good alternative.
"Doingwhatican" proposes a simple method of communication:
“Hand-squeeze and other techniques can be developed by people with PSP and carers working together to develop a system that suits them. In its simplest form the carer goes through the letters of the alphabet and the person with PSP squeezes his/her hand at the right letter. A more sophisticated version can be used, where a double squeeze takes you into code where one squeeze in each letter of the alphabet has a meaning such as: 'I am hungry', 'I am tired', 'Shut up' or other simple phrases that may be helpful…”
When all fails, sticking out the tongue to indicate "YES" can be a solution.
Recently there has been an information related to ALS: Voice & Message Banking (Susan Mast ALS Foundation) that may be applied to patients with PSP.
La “Salle IRF” and “wobblybee” reports about a voice treatment fot PD (Parkinson Disease):
Lee Silverman Voice Treatment (LSVT LOUD®) is a popular voice therapy that has been shown to improve voice loudness in people with PD for up to two years after treatment. LSVT LOUD therapy consists of intensive, high-effort speech exercises. LSVT LOUD involves 16 treatment sessions (four sessions per week for four weeks), as well as daily home practice. The exercises include prolonged vocal phonation with increasing volumes and changing pitch, functional words and phrases with increasing volumes. Throughout the 16 sessions, participants progress through a systematic hierarchy of speech exercises beyond words and phrases and into "outside the therapy room" conversations and transfer tasks.
Although primarily directed at loudness, there are effects on speech intelligibility, articulation, facial expression, reducing hypomimia, respiratory support, and voice quality.
In addition, LSVT also provides benefits in the safety and efficacy of swallowing, improving pharyngoesophageal swallowing function, as well as the effectiveness of involuntary coughing in people with PD.
Sorry to hear of your communication struggles with your loved one. I have recently lost my mom to PSP and remember those struggles well. Early on in the course of PSP my mom's right arm turned rigid and the left one was soon to follow. Pointing at a letter board or using a keyboard was impossible. Maybe the hand squeeze for a short time. Basically, I taught myself how to carrying on with a one-sided conversation. You know, "I bet you were just thinking about what your beautiful and only daughter(me) has been doing? Well, let me tell you." . The weather, local news, family news, old memories stuff like that filled the space. Every once in awhile, she would draw in a breath and exhale a reply. If I could not hear her, I would often put the blame on myself stating that I could not quite hear her because I had water in my ears(I am a swimmer)or I'd use some other excuse. I guess I just felt so bad for her not being able to speak loud enough for me to hear and didn't want her to feel like she failed. I always hoped that I hit the mark with her and that she was somewhat fulfilled by my carrying on.
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